You can prevent many symptoms of PKU by monitoring the foods you eat.
A PKU diet is not an easy diet to maintain, but it is important in order to protect your brain. That’s because toxic buildup of Phe in the brain can cause physical changes that lead to intellectual and behavioural problems.
Although some symptoms are permanent, many can be improved if blood Phe levels come back under control.
You may have heard something different in the past, but experts now agree that PKU must be managed for life.
Start PKU management early. PKU treatment should be started within 10 days after birth.
Manage PKU for life. PKU is a lifelong condition that requires lifelong care.
The impact of high or unstable blood Phe levels can be managed and in some cases, symptoms can be improved.
Have an honest discussion with your care team.Try this doctor discussion guide to help your conversation along
With a diet low in Phe and other forms of management, you can keep Phe levels low and stable.
Experts recommend that blood Phe should be maintained between 120 and 360 µmol/L in children <12 years old and pregnant women, and between 120 and 600 µmol/L in people older than 12 years. Everyone with PKU is different, and your care team will help you determine the right target range for you.